Hi everyone so this is my 5th week of protopic withdrawal and my 1st official week of topical steroid withdrawal.
I saw a different dermatologist on Tuesday. I started methotrexate and still having light therapy. He looked at my red sleeves and face and nodded. I told him about my symptoms and he said ‘yes, that does sound like addiction’ he said he had seen people like this before and that ‘no one should be on steroids for life’ HHHHOOOOOORRRRAAAAYY. If didn’t have crusty ooze ears I would have tried to hug him.
At the start of the week I got my braces off, so now my teeth look awesome. Hopefully one day skin will catch up. People say with a tan your teeth look whiter… well, let me tell you with a big red TSW face they look Simon Cowell white. TSW is like a tan…. but sh*t.
I am now off work on the sick and to be honest with how bad my symptoms are I don’t know how I kept it up for so long. It was really hard to concentrate on treating patients when you cannot control your body temperature, or trying to listen when all you can think about is the itch or the ooze you can feel forming on your arms.
It is weird going from 30 odd patients a day and riding my horse most days to being in the bath or on the sofa. I felt bad when the postman came round and I was in the house. I’m never in the house. I started thinking that he must think I’m one of those people who doesn’t work, lazy bones on the sofa with pjs on. I am also now sleeping in a separate bed to my fiancé, not his choice. I just didn’t want to wake him up itching or flipping the duvet on and off. The pile of skin in the morning too is just so gross and I don’t want to get skin all over him.
So how is my skin this week?
When I itch off the skin bark there is just ooze underneath.
So I get up, keep the sheet round my body so I don’t scratch at it or look at it and cry. Run the bath with Epsom salts and get in to wash the dried ooze cr#p off and layer of tight dry skin. Once I feel cleaner mentally it is easier to deal with. I watch a lot of Netflix in the bath and I have discovered ‘misfits’ and ‘American horror story.’
At the minute I am using jojoba oil on my face. I was using dermol200 at the start of the week but found it felt like I had someone following me round the house poking me with a pin in my worst oozy spots after I had applied it. I stopped moisturising and although I still felt like a human tree there was no stabbing pains. Today I tried a little shea butter on my arms and so far so good. I’m just trying to go with what is comfortable.
Best hours are during the day. Starting feeling tired around 3 ish and had a few cat naps through the week. Oozing starts around when Ian comes home from work. Not his fault lol just a coincidence. Itching coincides with oozing and a mental battle of….’ Its itchy’… ‘don’t itch’ … ‘it will ooze’… ‘okay maybe just a little itch’…’ and here’… ‘and here’… and oh ‘sh*t’… ‘Now look what you’ve done…’ and repeat. Worst spots are lower back, arms, neck, forehead, ears. That ooze smell is gross its like metal and something rotting, I don’t think anyone can ever forget it. On top of that I now keep getting BO, either that or someone has transplanted my armpit with a rotting mince and onion pie during the night. I never used to be a smelly person. You would think 2 baths a day and deodorant would help. I guess this shows the rubbish trying to come out my skin. I am thankful that I’m sleeping well and eating well at this point. I will never know if tapering helped at all. However my skin is thicker and I probably would be down to bone right now it it hadn’t thickened up. Mentally I don’t think it helped as I have had most of the TSW symptoms for a while, so it is going to feel like I have been in this process for ages.
Saw my usual derm yesterday, she still tries to have me admitted to hospital every week. I worry that they would sneak ts in those wraps. I said ‘At home I can get in the bath when I want, eat when I want and watch what I want on TV, I ll phone you if I’ m going to peg it’ The nurse laughed at least. Felt good on the drive home listening to some David Guetta tunes as it was the first time out the house for a few days.
I watched Nina Sloan’s videos on you tube and read Josh’s blog. All really positive stuff and they both look great now. I think there is a lot to be said for getting back to life and exercise with respect to healing as Nina healed fast and was back to teaching zumba by month 6 which is awesome. Hopefully I ll be back to riding my horse and working sooner rather than later.
I managed to man up a bit this morning and took some photos before my bath.